Sunday, April 12, 2009

Rett Syndrome Attacks

Well I have almost lost my cool today. Andrew woke up at 4 am screaming again. This is becoming an everyday occurrence. After climbing in the bed with him he went back to sleep for 20 minutes only to stay awake the rest of the morning swinging back and forth with his hands while I tried to sleep. We made a mad dash to get ready for church and off we went. It was loads of fun pulling him out of the car seat with bag, purse, and umbrella while it poured down with rain. Thank goodness for the handicap parking sticker. He made it almost through the entire service but in the middle of Max Lucado preaching he let out a big burp. It was too funny!
When we got home Felt and I tried to feed him lunch which turned into a screaming fit that lasted 45 minutes. Only Elmo which we are trying to fade out calmed him down. Constipation was the real problem and has been since we have taken him off the GFCF diet. After a trip to the bathroom and an Elmo video we tried again while attempting Vital Stim with him. His swallowing and chewing have gotten worse and since we have 4 months to our GI aptmt I am desperate to get it better. Once again another fit. Every time I do vital stim with him it turns into a tantrum. ARG!!!! I kept on and held his hands while trying to feed him the nutritious meal I made him and we lasted 15 minutes on vital stim. Better than nothing I guess and there is always tommorrow but after listening to the screaming starting at 4 am I am worn out. I am frustrated and days like this I know that Rett Syndrome is attacking him and our family. I would have loved an Easter egg hunt, pictures at church with his cousin and maybe a trip to the park but it wasn't going to happen today. And I would have loved to see him enjoy his cousins birthday party yesterday. I remember back to last Easter when he screamed the entire time we hunted for eggs. Most days he is our happy boy but these days it has become really difficult for us and sad for him. I tried to take him to the zoo last week after preschool. It was immediately chaotic for him with all the elementary schools in town there. He did a lot of the retropulsion-swinging back and forth, but he did enjoy the birds and would stop wringing his hands to look at them when I called his attention. More and more I notice other kids and adults looking at him and staring. People are so insensitive and just don't understand and I guess they are curious too. A year ago most people would have looked at him as a two year old having a tantrum or doing something weird, whereas now people look at him and see that special needs boy. Whatever the case he is our angel and I am thankful everyday for him and the things that he teaches us. I would like to say the staring doesn't bother me but it does and hopefully I will adjust to it like I have with everything else. I look forward to the day when we are all in Heaven and I see him running and saying "Mom, I love you." I long for that day and days like today I am definitely homesick, which makes me think of the song by Mercy Me called Homesick. Please pray for us and I hope everyone has a Happy Easter.

7 comments:

Brooklyn and Kelly said...

I am praying for you!! It is times like this that we all HATE Rett - when the good days get farther and farther apart and your lack of sleep sets in. I am so sorry. We are going through major feeding issues to and our wake up call is about 2:30.....I know EXACTLY how ou are feeling and I too long for the day our kiddos to not have to suffer with Rett Syndrome. Hang in there....better days are coming!
Big Hugs from Indiana!

Avery said...

Brandi, is he on reflux meds? Also, with both my kids, Zoloft for anxiety has made a huge difference in living a semi-normal life! Hang in there, it will get beter.

Hugs for Alabama XOXO

Karlie Grace said...

We too, know exactly how hard the screaming can be! After a few days worth, it can certainly be trying on the nerves ;) and i can't imagine how our kiddo's must be feeling! Have you tried Melatonin? We've had moments where it's been the only thing that works and also seen it not work at all! I'll be praying that you all get some much needed rest and for the little guy to have better days! I'm curious about his VitalStim. Are you doing it on his cheeks or neck and what number are you starting on? When we first started with Karlie, she would scream after the first ten minutes or so. We were starting on a four then the lady doing it was told that b/c of sensory issues, we should start much higher. We had success starting anywhere between seven and ten with cartoons and easy to eat foods. Most days she could handle an hour at a time with increasing intensity. Wishing you guys all the luck and sending big hugs your way!

Caitlyn said...

Brandi, let me just join the ranks of those who know exactly how you feel! The screaming...The not eating...For us it is the seizures right now...As she fell asleep on my lap yesterday my sister said "boy I wish mine would still nap.." and I wanted to say "well, if she had just had 5 seizures, yours would too!

abbysworld said...

I would definately look into the reflux issue. Also have his teeth checked to make sure he hasn't ground one of them down to a nerve. It is so frustrating to our kids because to him he is telling you.
Hang in there. It is so hard. Big hugs.

Brandi and Andrew said...

Thanks everyone for the comments. He is on reflux meds but I don't think they are working and we are trying Bethanochol- a recommendation from the GI. He uses Melatonin everynight and it works but it doesn't keep him asleep. With Vital Stim he always tolerated a level 10-12 on his throat but he gets cyring and screaming at a level 4. Maybe I will try to up it and see if he can handle. I never thought about the teeth. We go to the dentist this week so I will ask then.

Lesley said...

I find holidays are the hardest. Certain things are 'expected' to happen in the day and most times the kids are just not up to them. It is just too much. I still struggle with this with my Sarah and she is 12. I do not know what the solution is, but know you are not alone.