5-Year Check Up

This week Joshua had his 5-year check up with his pediatrician. 

The first thing they wanted to do was check his vision so the nurse asked me "will he do better identifying shapes or numbers on the chart?".  Since he does not recognize any numbers I had to go with shapes and tell the nurse that my 5-year old does not recognize numbers yet.  He named the shapes she pointed to with boys eyes open, but didn't understand the concept of covering up one eye and doing the same thing so he started shutting down and that was the end of that test!  :-)

Next they wanted him to put on a gown for the appt. and when we suggested it to him, he started to have a major melt down so we "passed" on wearing the gown (I knew his Dr. would understand and work around it).  To give some background, Joshua has been refusing to wear clothes for quite awhile now and will only wear PJs.  I'm sure to most people this sounds absurd and they are thinking to themselves - well just force him to wear clothes - after all, we are the parents.  Parenting a child with special needs is a whole other ball game and  this is not a normal child's type refusal - we have hour long BATTLES over wearing clothes in which I don't even want to describe the level of rage he gets into over it.  So, we usually just decide to choose our battles and let him wear PJs.  Anyway, we had been making some progress in this area in getting him to wear clothes OVER his PJs, but on the day of his appt. we actually got him into his clothes with no PJs.  Since we had won for the day, I was not going to rock the boat in the Dr.'s office over a silly gown.  Our Dr. didn't mind in the least.  :-)

Next the nurse told us that the Dr. likes to check all kids iron levels at 5 years old so she said she was going to take his blood via a finger prick.  Joshua was sitting on the table by this time and heard "take out blood" and so he immediately slid his shirt sleeve up and held out his arm to her for her to take his blood.  It was cute, but also sad to see that he has had so many blood draws that he hears the words and just gives his arm over like a pro.  You would not see that in most kids!  We explained they were just going to poke his finger and he didn't need to have blood taken out the normal way.  She poked his finger and he sat there, totally un-phased and no crying - the nurse was amazed.  Yep, our Doosie is a tough guy! 

Keto can stunt kids growth because of what they are eating and the calorie restrictions so I was really interested to see how his weight and height would compare to last year and I was pleasantly surprised that he did indeed grow some from last year.  Granted, we didn't start diet therapy until May and didn't switch to keto until November so he may not grow as much in 2013.  He gained 2 pounds (now 45 pounds) and grew 1 and 1/2 inches (now 44 inches) in the last year.  He is 75th percentile for both height and weight so that is great news! 

Joshua's iron level came back low (he's anemic) which is not too surprising when you look at what he eats every day.  She wanted to put him on an iron supplement, but when I asked what kind she said it was a liquid and I told her it probably had sugar in it and so he can't have it. So, we agreed I would ask our Swedish Keto team next week at our apt. what kind of iron supplement is okay to have on Keto.  So, we'll get that straightened out next week.  His pediatrician also wants him on fluoride, but we were unsure if we could do that as well so we'll get that answered next week too.  So much to think about with this diet - everything has to be carefully thought out. 

Everything else checked out well with the pediatrician so that was good.  We did talk about Joshua's behavior issues and she did mention that being anemic can make a person really irritable and crabby so that if we get his iron levels back up with a supplement that he may start acting a bit better.  Wouldn't that be nice!  All in all it was a successful trip to the pediatrician!

In other news, we seem to have lost a bit of seizure control over the last couple weeks.  We have been seeing some absence seizures during the day (not every day mind you) and some Myoclonic seizures at night (albeit very small ones).  I'm not sure why we have lost some control - I thought it started because of some stamps and food coloring he got into, but my Keto team said that is not very likely and since he has continued to have seizures since then, I'm beginning to agree with them.  We go back to see the Keto team on Monday so will discuss what we think is going on and possibly decide on raising his ratio.  We weaned off a med in December (Zarontin) and that med is supposed to help with absence seizures so I'm hoping it is not the wean that did it as I REALLY don't want to put him back on the med.  Since coming off the med he is starting to retain some information and learn a little bit at school.  Since coming off that med he has started counting, saying his ABCs and singing songs (all things we lost when seizures started).  It would kill me to have to put him back on that med and lose those skills again.  I would much rather go up on his ratio on the diet and try to fix the issue that way.  We had a great seizure free run from December 14th - January 26th (44 glorious days), but things started to change on Jan. 27th when he had two absence seizures at dinner time.  That was heart breaking because we have not seen a daytime seizure in MONTHS and I just had a pitt in my stomach about it.  I have faith we will get it figured out and get full control again, but it certainly is frustrating. 

People asked me a lot when he was seizure free if I was just over the moon excited and could finally relax.  My response was always that I'm over the moon that TODAY he is seizure free, but that I'm cautiously optimistic about every day forward and that I'm still nervous every day about seeing a seizure.  I think some people thought that was weird - why not just enjoy it?  It is hard to explain, but with epilepsy and his disorder especially it is hard to get comfortable as you are always suspecting a shoe to drop because well, so far one always has.  I've heard countless stories from other Doose parents about losing control at various times, so like I said, cautiously optimistic!  This fight is going to be long and so we take it one day at a time and are grateful for every seizure free day we get along the way. 

More to come next week after we see the Keto team on Monday.  Hopefully we won't have any seizures this weekend while we wait.