Nathanial's sick - another UPDATE

Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.
youtan
Registered User
Posts: 1592
Joined: Thu Aug 26, 2004 09:23 am

Re : Nathanial's sick - another UPDATE

Postby youtan » Thu Mar 23, 2006 09:35 am

Update -

Well, our new ped isn't so worried, am I'm feeling a little more at ease. We are going to redo some labs, testing his muscle enzymes to see if they are still elevated. So we are back to leaning toward this being just an isolated case of leg cramps from a virus. His eyebrows did go up when we mentioned that the enzymes were at 1299 when he was having pain and weakness. The ped is also testing his thyroid (TSH) due to his skinniness and dry skin. Unless his muscle enzymes are still elevated, we won't be going to the neurologist at this point. It will be a couple of days before we'll have the labs drawn and get the results.

Nathanial started at his new school today. His class has about a 2:1 ratio of boys to girls. Interesting....

User avatar
julie f
Registered User
Posts: 7993
Joined: Thu Aug 07, 2003 11:56 am

Re : Nathanial's sick - another UPDATE

Postby julie f » Mon Mar 13, 2006 01:31 pm

Tanya,

I don't know how I missed this, I'm so sorry.

I will send a prayer for your little boy that there is nothing serious going on. Please let us know how it goes next week.

Thinking of you,

youtan
Registered User
Posts: 1592
Joined: Thu Aug 26, 2004 09:23 am

Re : Nathanial's sick - another UPDATE

Postby youtan » Mon Mar 13, 2006 01:20 pm

Thanks for asking, he is feeling much better and was able to go to school for a few days. I can't wait to see my boys! They'll be here in a few days.

I've made an appointment with our new ped for next Wednesday (22nd) - then we'll make the appointment with a neurologist. I hope we won't have to wait long. So for now we are just trying to focus on our move. Hoping you are right Lucy, thats its just growing pains.

mama2twins
Registered User
Posts: 790
Joined: Mon Mar 07, 2005 02:03 pm

Re : Nathanial's sick - another UPDATE

Postby mama2twins » Mon Mar 13, 2006 12:52 am

Hi Tanya...just wondering how your little man is doing and if you have gotten any more answers. I hope he is feeling much better!

lucy
Registered User
Posts: 4706
Joined: Fri Dec 10, 2004 02:03 pm
Contact:

Re : Nathanial's sick - another UPDATE

Postby lucy » Thu Mar 09, 2006 12:19 am

Tanya, first off happy belated birthday to your little guy, secondly I hope you get some answers and its nothing serious.
I dont know if this helps at all but my daughter (whom they said was a month early) has almost always been small for her age (she started catching up recently) and she also has trouble riding a bike and has walked on her tiptoes quite a bit, plus she has complained about leg pain to a lesser degree (I assumed growing pains since she is starting to catch up a little bit) but she has always checked out ok at the Drs, I hope your able to get some reassurance from the Drs. Many hugs.

youtan
Registered User
Posts: 1592
Joined: Thu Aug 26, 2004 09:23 am

Re : Nathanial's sick - another UPDATE

Postby youtan » Thu Mar 09, 2006 09:38 am

The ped didn't say what his concerns are, except that through the bloodwork they've determined it probably wasn't meningitis or GB. He was mainly concerned about determining if there was immediate danger. All the troubles he's had over the last few years could just be due to him being very small and skinny for his age. Or it could be due to various diseases. But our ped didn't comment on any of this really. And thats what has me worried of course. There is no sense in me getting all worked up about it, but its difficult.

For those of you with school aged preemies born 30 wks or earlier - do you notice anything similar? Maybe I'll try the MOD boards as well.

I'll let you guys know more when we know more.

mama2twins
Registered User
Posts: 790
Joined: Mon Mar 07, 2005 02:03 pm

Re : Nathanial's sick - another UPDATE

Postby mama2twins » Wed Mar 08, 2006 09:30 pm

Happy Belated birthday to your little man and I am so sorry that it has been a stressful time surrounding the birthday. What are they thinking with the elevated muscle enzymes? I think anything that causes breakdown of muscle tissue, even temporary weakness froma viral thing, can cause elevated muscle enzymes. The previous GB thought above did not make any sense because GB comes on within weeks, not over years like you were saying with the leg pain. I hope you get some answers soon!

youtan
Registered User
Posts: 1592
Joined: Thu Aug 26, 2004 09:23 am

Re : Nathanial's sick - another UPDATE

Postby youtan » Wed Mar 08, 2006 05:03 pm

So I talked in more detail with my dh and the blood results. His muscle enzymes are elevated, which could mean, well, I don't want to go there. I should also say that in addition to having trouble with a bike, he occasionally walks on tiptoes - and has through this past entire 5 days of fever. When he 1st started walking he always walked on tiptoes.

This is going to be a long process getting to the cause of things and its going to be extremely difficult to be patient. We had to wait 9 months to see a specialist in KS when we were concerned about Jonathan's speech delay (in which we ruled out autism). I hope we aren't going to have to repeat this waiting process in OH. His 1st PCP appointment here isn't until Mar22.

jenandtheboys
Registered User
Posts: 1245
Joined: Mon Jan 17, 2005 05:48 pm

Re : Nathanial's sick - another UPDATE

Postby jenandtheboys » Wed Mar 08, 2006 11:38 am

Thanks so much for the update, Tanya, I've been anxious to hear something. Glad he's feeling well enough to go to school. We'll continue to hope and pray that it was all just a virus........please do keep us posted once you go to the neurologist. (((((hugs)))))

youtan
Registered User
Posts: 1592
Joined: Thu Aug 26, 2004 09:23 am

Re : Nathanial's sick - another UPDATE

Postby youtan » Wed Mar 08, 2006 11:19 am

We have the blood results back. The doc suggested that we take him to a pediatric neurologist for followup. Its still possible that his muscles were very weak due to a nasty virus, but this is more than a one-time occurance since we've seen him struggle with muscle weakness previously. There are a few autoimmune disorders in our family history as well as the fact that he was a micropreemie. Its not all over yet.

The good news is that he appears to have recovered from this specific incident and is off to school today. He will go to school today and tomorrow, then he'll be off until we've all settled into our new house late next week.

Thanks for all your kind words!!


Return to “Parents of Preemies”

Who is online

Users browsing this forum: No registered users and 3 guests