So much has happened!

[Anonymous]

Well, since the end of Jan. when we spent 5 days in the hospital for Rotavirus and found that in addition to reflux, Hunter has been having Infantile Spasms, a lot has happened.

We have been back to the hospital 2 more times trying out different meds to try to control his spasms (seizures). So far, its been VERY hard and VERY stressful. Hunter didnt respond well to his second meds and was screaming nonstop for several days so we had to check back in and try a 3rd med. The seizures and his reflux play off of one another and when he reswallows, he screams, then reswallows more, and then has a seizure. Its a very vicious cycle.

So far, there has been no finding of a cause for his Infantile Spasms, which is really a good thing. All of his tests are coming back ok, like his MRI, Upper GI, Xrays, blood work, chromosome work, metabolic work. With this new info, we have more hope of outgrowing the seizures. I pray to God everyday this is the case. Hunter is still very developmentally delayed. The things he did before all this started have mostly stopped. We are starting therapy very soon. I hope he catches up somewhat. The seizures themselves are a lot less violent and frequent, but he is still having some.

In reguard to his reflux, they are finding no blood in his stool and all his blood tests are coming back ok, so the GI doc doesnt think a PH probe or Endoscopy are necessary, especially since the risks are higher since Hunter is on anti-seizure meds.

The GI doc changed Hunter over to 1/2 Prevacid 15mg Solutab 2 times a day for his reflux. Is anyone else taking this and how has your child been on it? Do you have to worry about eating times with this type of med?

Hope you all have been getting by ok so far and your babies have been finding some relief!

[Anonymous]

I’m so sorry you are still having such a rough time. I hope HUnter gets better soon!
Sarah

[Anonymous]

Dawn

Thank you for updating us — it must be so hard for you to not have answers yet, but it seems it is kind of a good thing! The tests are important and hopefully he is just delayed because he has been in pain or under stress and once under control, he will catch up. Children are amazing and they recover quickly.

We have been on the solutabs. Yes, you need to worry about timing, unfortunately. At the beginning, we thought they upset Matthew´s stomach but he got used to it quickly. It did wonders for Matthew when he was in pain and i am praying that the same goes for Hunter.

[Anonymous]

Have you read about Sandifer’s Syndrome? The acid in the esophagus triggers a message to the brain and causes siezure/spasms.

http://www.emedicine.com/ped/topic2039.htm

My son was never officially diagnosed, but I’m pretty sure he had it too. It was hard to hold onto him he writhed around so much. Here is a link to some animations of Sandifer’s Syndrome. (click on the link at the bottom of the page to view the animations)

http://www.marci-kids.com/rigidbodyposturing.html

lansima2006-3-8 13:0:26

[Anonymous]

I meant to ask, do you dissolve the solutab in water and give it in a syringe? Do you add flavoring?

thanks!

[Anonymous]

Solutabs are already strawberry flavored. At 9 months of age, I just put the tab in his mouth while I was changing his diaper (that way I could see that he ate the whole thing) – it supposed to dissolve pretty quickly.

[Anonymous]

Dawn, I am so glad to hear from you and have been thinking of you so often since you posted about Hunter’s seizures. I’m sorry to hear that he’s been having a hard time with the meds and that the seizures are not yet under control. I really hope that things improve for him (and you) soon. It is great news that his other tests have come back normal, especially the MRI! Hopefully he’ll outgrow it, and do well with therapy.

We also just switched from prilosec to prevacid, but we don’t have solutabs only capsules here. So far i haven’t seen an improvement but it’s only day 6 of our switch. How were you giving the prilosec- compounded? Prevacid can also be compounded but the solutabs seem easier because of all the stability issues with these compounds.

Thank you for the update. I will keep Hunter in our prayers.

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