Today was spent establishing new doctors for myself and Shaynenn. We will establish Rethan with the doctor soon as well but they did not have an appointment right away.
I am so thankful for people on Facebook groups with the same disabilities as my son’s so I could ask for the best doctor Who would actually know what Ehlers Danlos and POTS are. Dr Villarreal at Children’s Physicians recognized that Shaynen is a complex case and she took her time talking with me about each body system that is affected by everything. She was sympathetic and knowledgeable and we left her office today with referrals to about a dozen different specialists to get started establishing his Specialist Team in Iowa. One of the referrals that she made is to an ehlers-danlos clinic, if I heard her right. The psych and therapist will not just be to talk about ADHD and things like that, but will actually work with him on what it is like dealing with a chronic illness. I think I have definitely found the right doctor to help us and oversee his care. That is a big relief.
Now the annoying thing is since we changed insurance we have to have the medicine prescribed by a doctor covered by that insurance. She didn’t have any trouble prescribing the medication but the insurance thinks it knows better and two of his medications have to be pre-approved. That means the doctor has to argue with them and convince them that he does need the medication.
One of these medications is what keeps him from throwing up multiple times a day. Before we started the medication he was throwing up 20 to 30 times a day. within a day of starting the medication the vomiting stopped. But now that he has run out of the medication he is starting to loses appetite and not feel good and starting to throw up. Thankfully it’s only been a couple of times so far, but he needs that medication. To buy this medication without the insurance would be $100 for a 30-day Supply. So I bought two pills which is one day, hoping that maybe the pre-approval can get done very quickly. I know that’s being very optimistic, but those two pills cost me $13. because he needs them and feels miserable without them, but it’s just not right. children should not have to suffer because their medication is so expensive.
As for myself I also saw a new doctor. He told me to come back in tomorrow morning after fasting and get blood work done so he can check levels on thyroid and vitamin D and other things like that before he prescribes the medications that I’ve been taking already. I can understand that because we didn’t have time for him to get all the records from my other office.
Tomorrow we have more appointments. The boys see their new dentist for their 6-month check-ups.
The other appointment is at the veterinarian for two little kittens that we have decided to Foster and try to find it home for. These are two of the Strays that live in my hometown that shaynen has and taking care of any time we visit. There were other kittens but many of them have died from what seems to be a respiratory illness coupled with the cold. These are the last two of the kittens that survived so we’re going to give them a Fighting Chance. We have been scheduled to see the vet and hopefully get some antibiotics or something to help them clear up the respiratory infection. I’m pretty sure of what it is because last summer one of our cousins took a little kitten with her and the vet gave antibiotics and it’s doing well now. I’m thinking they have the same thing. To keep her little kittens tiger and Tobias in your thoughts and prayers and positive vibes that they will be healthy and that we will find loving homes for them.