Last week I brought Ramya to an optometrist/ vision therapy specialist who works with kiddos needing vision therapy, specialized glasses, etc... Ramya's left eye looked slightly off in the photos we would receive from India, but I hadn't really noticed any problems after she had been home for a short time. I did notice, though, that she had a hard time at midline (which can be common with kiddos that have spina bifida), had a hard time with tracking, complained of her eyes bothering her sometimes, and I still wasn't sure her glasses prescription was correct. Tami, our PT, suggested we see Dr. Glonek. Dr. Glonek was very thorough and spent over an hour with her. He said that her eyes are crossing when she is trying to focus on something (and now that he said that, I can't stop noticing it... he is totally right!!). He said he doesn't think vision therapy will help her right now because it's been happening for so long and her muscles have now grown differently. At this point he thinks there is a good chance she might need an eye surgery. He wants to try and re-train the muscles first, before we talk about surgery, but he's not sure that will do the trick. She is a +0.75 prescription, but he wants to put her in +1.25 to see if over-correcting her will make her muscles work a little more. If that doesn't work, we will have to see Dr. Cassidy, a surgeon, and then will follow up with Dr. Glonek for vision therapy after the surgery. We ordered new glasses and he wants to see her after she has been wearing them a month to see what kind of progress she is making. I am praying that the change in glasses will help and that she will not need another surgery. I also had him take a quick peek at Madi and Conner, and it seems they may be having some problems too, so I will have them checked out more thoroughly as well when we go pick up Ramya's glasses.
Today I took Madi down to PCH for an appointment with Dr. Condie, her neurologist. He didn't get to see her last time we were admitted to PCH, and though they said we didn't need to follow up with him until our next scheduled appointment, I had some questions I wanted to discuss. His wife is about to have a baby so getting an appointment with him was tricky, but the squeezed us in and I was very thankful! He also spent about 45 minutes with us so that we could really talk things through, and it always means a lot to me when a doctor is willing to take that kind of time with us.
I told Dr. Condie that I would like to have oxygen at home to put on Madi when she is seizing. The clonazepam, her rescue medicine, never seems to be enough. The turning point for getting her to stop seizing seems to be once the paramedics put oxygen on her. I told him I want to be able to pop a clonazepam in her cheek and then put an oxygen mask on her right away in hopes that we can stop the seizures quicker and bypass the need for the extra doses of clonazepam, the paramedics, and a trip to the hospital. Madi has really only had 4 seizures this year, which is wonderful, but they were very long ones (they can easily last between 20-45 minutes at least!). We agreed that the quantity of seizures is no the big issue, it is the duration that is such a problem. He agrees that the oxygen would be a good idea for her and said it may take a little time to get it, as it's not a regular prescription, but that he thinks he can get it for us. We left her Keppra dosage the same and are going to try the oxygen for now and see how it goes. If this doesn't help, she may need a second seizure medication at night before bed (the kepra is twice a day).
Another issue I talked with him about is rashes Madi has had around her mouth. She gets the rashes any time she gets a little gluten or dairy, but even being very, very careful with her diet (we don't eat many processed foods anyhow, and I cook mostly from scratch), I cannot seem to get the rashes to go away. I asked if it could be from her Keppra, as we get generic. He said it very well could be from the generic form of keppra. With generics, they can change the formula of their suspensions (the medication itself is the same, but what they mix it with can vary) and not notify anyone, so it very well could be that they changed the formula and she is now reacting to something in it. We are going to try non-generic keppra and see if that takes care of it.
Dr. Condie would like Madi to see an allergist because of her food sensitivities, as well as how she reacts to bug bites (I was telling him I would like to get an Epipen, just in case, because she gets huge welts from bug bites and I worry what a bee sting could do to her). Today when I brought her in she also had a rash all over her chest, abdomen, armpits, and legs. I have no idea where the rash came from or why she had it. He gave us a referral to an allergist that works out of phoenix children's hospital (PCH) and we will make an appointment with her tomorrow.
Other than that we don't have any big updates. We head to California for about a week and a half and will spend 2 days at Disneyland while we are there. The kiddos are SO excited!! We have quite a few more appointments to cram in between now and then, so these next few weeks are going to be busy. We can't wait to go and relax though, and it will all be worth it!!