Busy Month

This month has been a crazy busy month for us. To start with we had the normal physicals for the kids. These physicals are also important for paperwork that is needed to be updated. Well in the process we ended with unexpected specialty appointments for several kids.

Celidah was referred to neurology for her migraines because they have suddenly increased and been worse. Thank goodness the MRI showed that her migraines are just that, migraines. She now just follows up as needed for med refills, or if her migraines become worse again.

Jade also received a neurology referral. She has been having severe headaches, dizzy spells, and nearly passing out. After seeing the neurologist she was referred to a cardiologist and connective tissue/joint specialist. She too needed and MRI, blood work, follow up, and more dr's.

We discovered her "monthly" cycles are not regular enough, to heavy, and since they have been affecting her school attendance, she needs additional meds to help stabilize the hormones within her system. If this does not work, her Dr, has other treatment options to help her out.

Right now the biggest concerns for the neurologist to either confirm or rule our for Jade are chiari malformation (something with the brain stem *I think*) and Elhers Danlos Syndrome (EDS). We already know she has hypermobility syndrome, and according to the neurologist on the (something) bending scale she hit all the bending points plus some others.

He said the dizziness or vertigo could either be heart related or chiari related. Well we now know that at this point these are not cardio related. She had an echo and EKG done and both came back good. However, her cardiologist said with EDS being suspected she now needs to being followed by a cardiologist every 6 months to reevaluate and make sure things have not changed.

Zach also needed additional specialty appointments. (sigh)... He was sent off to an orthopedic specialist. During this appointment he too was diagnosed with severe hypermobility syndrome, and sent to physical therapy to start with. She also recommended that he see dermatology for the excema looking rash he has. She does not think it looks right, and with the ointment not helping and his rash getting worse after playing outside, combined with his joint pain, he was also referred to rheumatology.

The best part was that Ellie is still growing and gaining (on her curve). She is also stable right now with her long list of medical issues. We did not need to add any new doctors to her current comprehensive team.

Corbyn's platelets, while they did drop, they have returned close enough to his base. He was at 35K and he is now at 25K. This is close enough for us and his hematologist at John Hopkins. Oh and Corbyn was able to have his Flovent dropped completely! If he continues without needing his rescue inhalator for the next 6-8 months we may be able to have the asthma removed! He will only have ITP!! We are so happy about that.

Jairon only has asthma and during his physical was trying to convince his doctor he did not need his asthma meds either nor was he coughing. LOL he was giving this argument as he was coughing. The kids doctor and I just looked at each other and smiled knowing what what really going on and he was not ready to even be dropped down yet.

However, if the older kids are able to go all summer without any asthma issues then we will try dropping them down one dose step and see how they do. Ellie on the other hand will not be able to be dropped down. Every time we have tried, she gets sick and ends up back in the hospital.