Tuesday, May 28, 2013

Long Term Affects of Anti-Seizure Medications

I am hesitant to write this post because we feel complete judgement from people (mostly the medical community) about this, but I want it out there so that if anyone else out there has kids on medications, they will take extra precautions that we weren't aware of.

For the first six months of his life, Mikail was on an anti-seizure medication called Phenobarbital. He got it at 9 a.m. every single morning and it was an oral, sweet, syrupy medication.

Looking back, Mikail probably started teething around 3 months of age because suddenly we noticed he had these giant top front teeth. We didn't think much of it since we had been wiping his gums from day one and then went to brushing his teeth twice a day.

A few months ago, I lifted his lips and noticed a shocking amount of decay on the top front teeth near the gums and we immediately took him to the dentist who booked him in for dental surgery. They don't do dental work on little kids like that without general anesthesia. The feeling at the appointment? JUDGEMENT for not brushing his teeth and blame for giving him a bottle in his bed. Which NEVER EVER happened. He has never had a bottle in his bed and only had his first taste of juice after his first birthday and in a cup at that. He was off the bottle completely by the time he was 11 months old and onto cups and sippy cups.

I felt a huge amount of "Mama Failure" because of all of this, knowing that we had done everything right, but it still happened. I went down the road of trying to find answers and found out that the use of Phenobarbital can weaken teeth and cause early decay. Sigh. I had this confirmed with his Neurology Nurse Practitioner. She said that they see it quite often and there's nothing you can do about it except treat the cavities. She also assured me that this does not mean that his adult teeth will be bad. Baby teeth are soft and easily damaged. Adult teeth are a lot stronger.

Anyhow, there was a delay (clerical error, apparently, but whatever) and the surgery that was to take place in February is now taking place in June. Yesterday I took Mikail in for his pre-op visit and because we have a family history of Malignant Hyperthermia (a life threatening reaction to some general anesthesia) we had to have a little visit with the head of anesthesia. Over and over and over again he kept saying (to Mikail, but really to me, because whose 3 year old brushes their own teeth? Ours attempts to after we do the actual brushing so that he does learn, but we do the 'real' brushing). Anyhow, the anesthesiologist kept saying, "Mikail, you need to brush your teeth, so you don't land back here again" or "Brush those teeth, Mikail!" JUDGEMENT.

"Mama Failure" was in high gear yesterday. Tears were shed. Guilt and anger set in for a bit. I just wish people would get the whole story sometimes and not just go to the obvious AND have some compassion on our tender Mama souls~especially after waiting two hours to see the anesthesiologist DURING what would have been the kids nap time. I felt like I needed an award after that afternoon, but instead I felt judged and like a Mama failure. We were definitely going through the Tim Horton's drive thru for a coffee with high octane cream (instead of 2 milks) and a snack pack of Tim Bits. When we got to the window to pay, the cashier said the lady in front of me had paid for my order. Of course, my tender Mama soul burst into ugly tears and was just so grateful for this $3.85 cent gesture.

Anyhow, the long and short of it? If you have a child or infant on oral medications, please, please take extra precautions so as to avoid this kind of added stress to your child's life.

If you think of it, also pray for Mikail as he is put under general anesthesia for the procedure. That he does not not have a reaction to the anesthesia and that all will go well. We don't know what the procedure will all entail since they don't quite know the extent of the damage. If it's not too bad they can clean the area and fill it. If it is quite bad then they will clean and fill and put silver caps over the damaged teeth. If it's really bad, they will have to pull the teeth. Please, please pray that it's just plain old fillings. Kids can be so mean and for him to have a speech disorder AND a smile of silver front teeth (or no teeth) just breaks my heart. (Enter big time Mama Guilt).

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