Finally Friday!

[cagoldi]

Sorry you still aren't feeling well, wedding. Hope you're able to get some good rest today. Does P come back tonight?

[mwhip]

joelies I hope an unbiased 3rd party is helpful. It might be good for you both to go separate as well as together. I felt like it really helped us both realize things. I wish we could have kept going regularly, but it was expensive.

[trtlcrzy]

Morning. Currently sitting at the doctor’s office with S. She woke up crying last night and said her ear hurt. H is at school and it will probably be time to pick her up when we’re done here.

I’m glad surgery went well snoopmommymom

flamingo safe travels!

[snoopmommymom]

joelies I’m sorry that must be hard that he thinks everything is your fault. I hope a therapist can question his line of reasoning so he sees how he contradicts himself.


O is definitely in more pain now that his meds are wearing off. It took a while, but i got him to swallow all his tylenol. Now I’m just hoping it’s effective in relieving his throat pain. He is now eating m&m’s so he’s doing ok.

[snoopmommymom]

trtlcrzy I’m sorry she’s sick. Isnt it a relief though that she can at least tell you what’s wrong?! It was always so hard when they couldn’t talk and it was a guessing game.

[trtlcrzy]

Nov 2, 2018 9:50:28 GMT -6 snoopmommymom said:

trtlcrzy I’m sorry she’s sick. Isnt it a relief though that she can at least tell you what’s wrong?! It was always so hard when they couldn’t talk and it was a guessing game.

Yeah, for sure. This means surgery though if it is an EI. Tubes and adenoid removal.

[trtlcrzy]

Good news, no EI yet...but one is red so I’m supposed to keep an eye on her and see if it develops into one.

[lfig]

Nov 2, 2018 9:48:43 GMT -6 snoopmommymom said:

joelies I’m sorry that must be hard that he thinks everything is your fault. I hope a therapist can question his line of reasoning so he sees how he contradicts himself.


O is definitely in more pain now that his meds are wearing off. It took a while, but i got him to swallow all his tylenol. Now I’m just hoping it’s effective in relieving his throat pain. He is now eating m&m’s so he’s doing ok.

Are you doing liquid or chew-able Tylenol?  S did better with chewable...she would just kinda let it dissolve in her mouth.  But it seemed to be less traumatizing for her.  lol.

[tgrimes]

The immunologist called me back....and I still don't have any real answers. He's not allergic to anything that they tested for, his total blood count is good, even though 5 of his strep titers are low they're still higher than other titers on healthy immune systems but his total immunoglobulin level is low.

For now, I'm supposed to wait and see what happens. If he gets sick & requires antibiotics a couple times again (oral or ear) then I contact him and we can start preventative antibiotics to get him through the winter. He said it was a good sign that his last cold didn't turn into any infection requiring antibiotics.

The preventative antibiotics wouldn't prevent him from getting sick, but could prevent the sickness from turning into an infection requiring ABX or shorten the duration of the ABX.

(Sorry this was a lot of rambling.)

[snoopmommymom]

I’m sorry you didn’t get any definitive answers tgrimes, but also relieved they didn’t find anything major going on.

[tgrimes]

Nov 2, 2018 10:46:37 GMT -6 snoopmommymom said:

I’m sorry you didn’t get any definitive answers tgrimes , but also relieved they didn’t find anything major going on.

Yes, that's kind of where I'm at right now.  Glad it's nothing serious but then why the hell is my kid always sick then? 

Especially now that it's possible he has some hearing issues, even though they told me not to worry about it, but y'all know I'm going to worry about it.

[wineallthetime]

Nov 2, 2018 10:49:53 GMT -6 tgrimes said:

Nov 2, 2018 10:46:37 GMT -6 snoopmommymom said:

I’m sorry you didn’t get any definitive answers tgrimes , but also relieved they didn’t find anything major going on.

Yes, that's kind of where I'm at right now.  Glad it's nothing serious but then why the hell is my kid always sick then? 

Especially now that it's possible he has some hearing issues, even though they told me not to worry about it, but y'all know I'm going to worry about it.

That's frustrating He better be the healthiest school age and up kid ever!

[cagoldi]

Nov 2, 2018 10:35:46 GMT -6 tgrimes said:

The immunologist called me back....and I still don't have any real answers. He's not allergic to anything that they tested for, his total blood count is good, even though 5 of his strep titers are low they're still higher than other titers on healthy immune systems but his total immunoglobulin level is low.

For now, I'm supposed to wait and see what happens. If he gets sick & requires antibiotics a couple times again (oral or ear) then I contact him and we can start preventative antibiotics to get him through the winter. He said it was a good sign that his last cold didn't turn into any infection requiring antibiotics.

The preventative antibiotics wouldn't prevent him from getting sick, but could prevent the sickness from turning into an infection requiring ABX or shorten the duration of the ABX.

(Sorry this was a lot of rambling.)

There's such a thing as immunodeficiency with *near* normal titers. If his total IG levels are low I wonder why they are entertaining ABX and not IV IG? Or some form of immunoglobulin augmentation?

It just sounds strange because my Immunologist has me on the IG specifically so I can avoid the frequent and long_ term use of ABX, especially because people with immunodeficiency are more likely to develop resistance.

I guess they manage pediatric patients differently.

Just thinking out loud...

[cheeksmum]

snoopmommymom, I’m glad O is doing so well!

flamingo, have a great trip!

[cheeksmum]

joelies, I hope the 3rd party is able to help and get both of you to a better place.

wedding, feel better soon and get some rest.

[cheeksmum]

tgrimes, sorry you don’t have answers. But it’s nice to have a plan in place to hopefully make things easier.

[cheeksmum]

I still haven’t been able to nap but I am happy that I had my hair appointment. Just feels refreshing and I cut a lot off.

[tgrimes]

Nov 2, 2018 11:03:09 GMT -6 cagoldi said:

Nov 2, 2018 10:35:46 GMT -6 tgrimes said:

The immunologist called me back....and I still don't have any real answers. He's not allergic to anything that they tested for, his total blood count is good, even though 5 of his strep titers are low they're still higher than other titers on healthy immune systems but his total immunoglobulin level is low.

For now, I'm supposed to wait and see what happens. If he gets sick & requires antibiotics a couple times again (oral or ear) then I contact him and we can start preventative antibiotics to get him through the winter. He said it was a good sign that his last cold didn't turn into any infection requiring antibiotics.

The preventative antibiotics wouldn't prevent him from getting sick, but could prevent the sickness from turning into an infection requiring ABX or shorten the duration of the ABX.

(Sorry this was a lot of rambling.)

There's such a thing as immunodeficiency with *near* normal titers. If his total IG levels are low I wonder why they are entertaining ABX and not IV IG? Or done form of immunoglobulin augmentation?

It just sounds strange because my Immunologist has me on the IG specifically so I can avoid the frequent and long_ term use of ABX, especially because people with immunodeficiency are more likely to develop resistance.

Just thinking out loud...

He said because of his age and the fact that he may need these ABX in the future, he wouldn't want him to become resistant to them by placing him on preventative ABX.  He also said it was my call though.   I have a pedi appt next week so I'm going to ask her opinion, too.

He basically said there's no explanation for why his total immunoglobulin levels are low.  Thoughts?  If I send you screen shots of his labs could you look at it and tell me what you think?  You know more about this than anyone I know right now so if you think I should do something else, please tell me.

[tgrimes]

Nov 2, 2018 11:00:51 GMT -6 wineallthetime said:

Nov 2, 2018 10:49:53 GMT -6 tgrimes said:

Yes, that's kind of where I'm at right now.  Glad it's nothing serious but then why the hell is my kid always sick then? 

Especially now that it's possible he has some hearing issues, even though they told me not to worry about it, but y'all know I'm going to worry about it.

That's frustrating He better be the healthiest school age and up kid ever!

That's what the doctor said, too.  Ha ha ha!

[guster]

I’m sorry you didn’t get more definitive answers,tgrimes.

[joelies]

I'm so frustrated for you guys, tgrimes. I'm glad he's not seriously ill of course, but I wish they could tell you something definitively.

[jewels]

snoopmommymom, hope the tylenol relieves his pain! And just a reminder to stay ahead of it (ie redose before the last dose wears off!)

joelies I hope the therapist helps and your H really tries to look at your perspective.

tgrimes I agree with others, hopefully H is just getting all his sicknesses out of the way now

[vino]

I'm sorry you didn't get definitive answer tgrimes, frustrating for sure.

[vino]

Hey everyone.  Woke up this morning to discover that I'm officially in a snow globe.  The snow is here and I'm pretty sure it's staying until March now.  
So I figured why fight it, I'm watching 'The Holiday Calendar' on Netflix.  When in Rome...and all that.

[tallb]

Hi guys, I totally missed yesterday. My phone is dying so fast with the Pie Android update. They are sending a warranty replacement, but of course today it's doing better.

Last night on Pennsylvania Ave a lady legit tried to get in my car thinking it was an Uber. I never lock my car doors and she opened J's door, thank goodness the kids weren't in the car! And it wasnt a car jacker or anything 😱. Lock car doors!

N has a low grade fever, so I'll prob have to fetch her after nap. Daycare emailed to warn me that it's near 100..

[snoopmommymom]

Nov 2, 2018 11:48:10 GMT -6 jewels said:

snoopmommymom, hope the tylenol relieves his pain! And just a reminder to stay ahead of it (ie redose before the last dose wears off!)

joelies I hope the therapist helps and your H really tries to look at your perspective.

tgrimes I agree with others, hopefully H is just getting all his sicknesses out of the way now

But i can only give Tylenol every 4 hours and it starts wearing off before the 4 hours is over.

[trtlcrzy]

I decided to rotate my mattress because it’s almost DST and I needed to wash my sheets anyway. So I got it all turned around, was putting the fitted sheet on, got to the last corner and then got a terrible pain in my lower back. So now I’m laying on my half made bed, on a heating pad. I took ibuprofen too. I don’t have time for this so it better get better soon.

[trtlcrzy]

I’m sorry you didn’t get any real answers tgrimes.

[wedding]

Nov 2, 2018 9:40:25 GMT -6 cagoldi said:

Sorry you still aren't feeling well, wedding. Hope you're able to get some good rest today. Does P come back tonight?

Yes but really late. My parents are picking up C and taking him to dinner. I’m d hating going to the walk in for flu test but that seems daunting right now. Maybe tomorrow if I’m not better.

[cagoldi]

Nov 2, 2018 11:19:44 GMT -6 tgrimes said:

Nov 2, 2018 11:03:09 GMT -6 cagoldi said:

There's such a thing as immunodeficiency with *near* normal titers. If his total IG levels are low I wonder why they are entertaining ABX and not IV IG? Or done form of immunoglobulin augmentation?

It just sounds strange because my Immunologist has me on the IG specifically so I can avoid the frequent and long_ term use of ABX, especially because people with immunodeficiency are more likely to develop resistance.

Just thinking out loud...

He said because of his age and the fact that he may need these ABX in the future, he wouldn't want him to become resistant to them by placing him on preventative ABX.  He also said it was my call though.   I have a pedi appt next week so I'm going to ask her opinion, too.

He basically said there's no explanation for why his total immunoglobulin levels are low.  Thoughts?  If I send you screen shots of his labs could you look at it and tell me what you think?  You know more about this than anyone I know right now so if you think I should do something else, please tell me.

So first of all, you're definitely doing everything right. It's super frustrating and sometimes downright discouraging because it's hard to get in front of a doctor that doesn't dismiss you or condescendingly tell you there's nothing of concern. You've already accomplished that, and it's huge. That required tons of work and persistence on your part.

Personally, yes, I would hold off on prenventive ABX. Now, I do have some very strong ABX I keep on hand because I have been explicitly directed to do so if I experience certain recurring issues I can use those before my infection becomes threatening. But I don't just stay on them regularly.

You can send me his labs and I can compare them to mine, although I'm not sure what it can tell us. Can't hurt to look.

As far as why his total IG levels are low, I would ask if he thinks he has effectively ruled out a primary immunodeficiency at this time. Is he willing to entertain that H has specific antibody deficiency?

Also, I know this gets confusing here, but gene expression changes over time so even if they say no, I wouldn't completely let it go if he keeps getting sick. What we were told for Dude and X is that it might not show up on tests now, but very well might as they get older.