Anonymous wrote:Have you gotten a differential diagnosis? SPD is not a diagnosis.
Anonymous wrote:Anonymous wrote:Thank you all for the reply. Fortunately, with the bottle, we realize he can drink 2x 3x what he would drink from a cup. So we are going to buy a good scale and measure his progress. However, we will still have to treat his SPD. My wife is looking into going to STAR institute in Colorado and I've been looking into yourkidstable.com to figure out what to do. The person who runs that website replied to our comment to try the sensory bins, so we are trying that right now. But our son would only use his finger, not his whole hand. So I am playing find the toy game where I bury it deep enough so he would have to dig deeper.
We've taken our son to the Kriegers for evaluation. It was simply in a room with many "specialists and doctors" who observed him and after costing few grand just for that evaluation, we felt we didn't get anywhere. We had planned to enroll him in their intense therapy sessions, but the therapists and doctor's feedback on Krieger's was negative. In fact, the mother with the similar situation I had mentioned had gone to Kriegers as well, but she was not happy with them (we are trying to get her number from the doctor so we can get more feedback of the both places).
I had thought our situation was desperate, but hearing others with worse situation overcoming their obstacles gives me hope.
Unless KKI refused to help you, I'd at least try them. Some practitioners think their methods are too harsh (is that the problem of your doctor/therapist?), but it sounds like your kid is a relatively extreme case and could really use the help.
Anonymous wrote:Anonymous wrote:Is pediasure better than whole milk with carnation instant breakfast mixed in? Our ped said they are the same and to go with the carnation. This is pretty much the only food intake DC has all day, but will take 24-32oz over the course of the day (has to drink it from a bottle or won't drink it at all).
Why not do both? You'd have to look at the nutritional value. The carnation is a good way to transition to milk, if your child will drink it. Mine would not drink it. Pediasure is fine 1-2 times a day from when I called them. My kid liked the toddler formula and it was much cheaper than pediasure so we stuck with that till he started to eat more and he finally decided to drink milk. He went many days at 2-3 where he drank that much formula. We did a sippy over the bottle but it had a soft tip so it was easier to drink. I would not transition off of any of them till your child is eating 3 meals a day and snacks regardless of what you give or the pressure from others not to.
Anonymous wrote:Thank you all for the reply. Fortunately, with the bottle, we realize he can drink 2x 3x what he would drink from a cup. So we are going to buy a good scale and measure his progress. However, we will still have to treat his SPD. My wife is looking into going to STAR institute in Colorado and I've been looking into yourkidstable.com to figure out what to do. The person who runs that website replied to our comment to try the sensory bins, so we are trying that right now. But our son would only use his finger, not his whole hand. So I am playing find the toy game where I bury it deep enough so he would have to dig deeper.
We've taken our son to the Kriegers for evaluation. It was simply in a room with many "specialists and doctors" who observed him and after costing few grand just for that evaluation, we felt we didn't get anywhere. We had planned to enroll him in their intense therapy sessions, but the therapists and doctor's feedback on Krieger's was negative. In fact, the mother with the similar situation I had mentioned had gone to Kriegers as well, but she was not happy with them (we are trying to get her number from the doctor so we can get more feedback of the both places).
I had thought our situation was desperate, but hearing others with worse situation overcoming their obstacles gives me hope.
Anonymous wrote:Is pediasure better than whole milk with carnation instant breakfast mixed in? Our ped said they are the same and to go with the carnation. This is pretty much the only food intake DC has all day, but will take 24-32oz over the course of the day (has to drink it from a bottle or won't drink it at all).
He still has his feeding tube but he is eating now but because he has other severe disabilities, they use it to provide medicines he can't/won't take by mouth. It also comes in handy when he's ill and needs additional fluids. Good luck!