Friday morning I rushed both kids out the door and was on the road by 7am. T would have loved to have joined us, but he had work obligations. So, we jammed for an hour and a half to kids music (I know every song made for children now, seriously), the kids spilled on their clothes, they laughed, signaled that they were all done with the carride, we stopped at McDonalds, and finally arrived at the Mayo Clinic around 8:45am. My Mom works there so she met us there and we took the kids to her office to see her co-workers. My Dad then met us at the actual appointment, and he and Nur played while my mom joined me at the appointment. A 2nd set of hands and ears is always very helpful at these things.
The Dr. was extremely nice, and so good with TT. TT wasn't scared at all. She just sat and smiled and played with my Mom while I filled the Dr. in on what had been happening up until this point. The Dr. did a hair pull test and tried to remove a few hairs from TT's head. She had a difficult time doing it. The nice Dr. then asked if I minded if she brought in another Dr. to take a look. Of course I didn't mind. We drove an hour and a half to get some answers, and I was willing to see all the doctors in the world to get this figured out.
A few minutes later, the original Dr. and another Dr. walked in. The new Dr. examined TT's head, and asked if she had always had a receeding hairline on the side of her head. I mentioned that I don't remember it being that receeded originally. Both Dr's then left the room again.
About 15 minutes later, the original Dr. came in and started explaining to me her thoughts.
Basically, she said that originally, she thought TT probably started losing her hair due to Telogen Effluvium. This makes sense because right before TT started losing her hair, she had a high fever and I brought her to the Dr. and it was Hand and Foot Disease. After a couple days of Tylenol, she felt completely fine, but in kids, an illness or stress can cause hair to fallout. And the Mayo Dr. is thinking that this what started the hair loss. She said then though, it looks like it has turned into androgenetic alopecia, which is exactly what the UofM diagnosed her with.
The nice Dr. T told me that she always reviews the patient's files before seeing them. And when she received TT's a couple weeks ago, and saw that the 1st opinion at the UofM was Androgenetic Alopecia, she basically laughed because she thought it was near impossible for a 19 month old to have this, and she was very sure that her diagnosis was incorrect. But upon meeting TT, and seeing for herself, she too thinks it's Androgenetic Alopecia. She said she has never diagnosed anyone TT's age with this, or anywhere close to TT's age, but all signs are pointing towards this. She said she did want to do a lot of blood work today though, as well as a bone age xray. She said before ordering the bloodwork, she wanted to talk to a Dr. in Endocrinology. She got on the phone that minute, and called an Endocrinologist. Seriously. . . another reason I LOVE the Mayo Clinic. It's a one-stop-shop. All the experts that needed to be consulted on TT's case, were consulted immediately. I love that.
Right after the appointment, TT went and had her bone aging xray, and then had her bloodwork. They are looking for pretty much everything. TSH, T4, Vitamin B6, Vitamin D, a bunch of other things that I can't remember. A part of me is hoping they find something in her bloodwork. Something that will really explain what is going on. If all of her bloodwork comes back normal, than this is definitely androgenetic alopecia. And the Dr. at Mayo also suggested Rogaine. Rogaine people. For my 1 year old.
And then there is the Rogaine debate. T feels really strongly that we not give our 1 year old Rogaine. I've been told by 2 Dr's that this is what we should do. I feel stuck. I see T's point. There is no evidence or cases out there of a 1 year old taking Rogaine. It's a chemical. She could possibly need it for the rest of her life. No one really knows the long term effects of taking it. But I also know that T doesn't know what it's like to be a girl. It kills me that TT may deal with this the rest of her life. I thank God it's not life threatening, but it still has me down.
So, that was the most recent appointment. I hope to hear from the Mayo Clinic sometime this week about the bloodwork.
5 comments:
What about a Rogaine compromise? She is little. She doesn't care about her hair now. And she seems to have a lot of it that the bald spot/thinning area isn't obvious. If, when she gets older, she wants to use it, then revisit. Maybe there will be a better treatment by then? Just a thought.
I'm really glad you got a second opinion, and that was so helpful that your parents were able to meet you there to help with the appt. I agree with the other comment....maybe wait on the Rogaine. S is little right now and she doesn't know that she is supposed to have a full head of hair. I like the thought that maybe in the future there might be other alternatives. I agree with T that it is a little concerning to have her on Rogaine for the long-term. Thanks for keeping us posted. Heather
It sounds like you have been to some really good and thorough doctors. It is always hard making decisions for our children and trying to do what is best for them, especially when sometimes we don't really know what is best. We struggle with that a lot. In the end though you do the best that you can with what you know. I'm sorry you guys are going through this :(
So glad you had a great experience at Mayo. Praying for peace as you continue on this journey and make decisions for your beautiful baby girl!
Hmmm... I can see why you're feeling very stuck. This is rough on you, Mama!
The Mayo Clinic sounds awesome!
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