What do you do while waiting for IVIg?

[cobbiemommy]

What do you do for your child while waiting for IVIg? My son is on abx, allergy meds, Metadate, and generic Celexa. Too much everything if you ask me.

 

He is just exhausted and depressed. Our families are no help (my parents are deceased, my mother in law is 86 and in frail health), my siblings that live close have all pretty much bailed on us. Depressing to be sure for me.

 

We have make it through to July 24 and I'm just not sure how that is going to happen. I know I wrote on here over a week ago about the same thing, but this is my only safe place to vent. I feel bad that he feels bad. He is so tired, fatigued and depressed. He has low IGg, no strep antibodies, and is just pooped from fighting strep and bartonella for so long......

 

It is just the bouts of tears every other day that are getting to me. No teenager should feel this bad.

 

Feeling pretty crappy myself right now. Blahhhhhhhh

 

Cobbie

[Kimflow]

Cobbie,

Sorry it is a tough time right now. As I am trying to keep my head above water also lately, I would say....look for some of the blessings that remain. that is what I do. It is difficult to watch your child suffer. I know. And I too know that sometimes as a family, you feel forgotten. Force yourself to look for your blessings that remain. Help your son to do this too on the days that aren't so dark for him.

[1tiredmama]

{HUGS} I'm so sorry that your ds is feeling so low right now. I know how hard it is to watch. I have been watching my children suffer for more than a decade, and like you, I am eager to treat this aggressively. We are waiting for PEX. It has taken me a long time, but I have come to learn that this illness is a rollercoaster full of ups and downs. I try to remind my husband and myself when the bad times hit that it will pass. It always does.

 

Hang in there. Vent as often as you need to.

[Tracie]

I am so sorry that you have to wait so long I guess we just got lucky both IVIGs for my dd we did not have to wait so long

I pray for you to have the strength to hang on..

because what other choice do we have??

I hope he will find the strength to hang on too..

Tracie

[ptcgirl]

I can relate, as I'm sure most of us can. Watching a child suffer is devastating. When things are bad like that for us, I try hard to distract the whole family as much as possible. My DD loves the computer and most of the time has serious time limits. During bad times I let her use it pretty much as much as she wants. It really distracts her. Going on a quick trip or mini-vacation helps too. Just getting out of the same routine. Ground hog day of living in the PANDAS nightmare. None of this takes it away but if I can figure out a distraction it helps the time pass. Are you on a standby list for IVIG so if someone cancels you can get in sooner?

[tpotter]

What do you do for your child while waiting for IVIg? My son is on abx, allergy meds, Metadate, and generic Celexa. Too much everything if you ask me.

 

He is just exhausted and depressed. Our families are no help (my parents are deceased, my mother in law is 86 and in frail health), my siblings that live close have all pretty much bailed on us. Depressing to be sure for me.

 

We have make it through to July 24 and I'm just not sure how that is going to happen. I know I wrote on here over a week ago about the same thing, but this is my only safe place to vent. I feel bad that he feels bad. He is so tired, fatigued and depressed. He has low IGg, no strep antibodies, and is just pooped from fighting strep and bartonella for so long......

 

It is just the bouts of tears every other day that are getting to me. No teenager should feel this bad.

 

Feeling pretty crappy myself right now. Blahhhhhhhh

 

Cobbie

 

Sending PM

[Dedee]

Just want to say how sorry I am that your family is suffering. This is a horrible time and there is no right or wrong way to get through it. It is so unfortunate that you have no one in your family to support you. I know it may be difficult to find the time but try to get outside or excerise as much as possible to keep your mood up. A nice glass of wine works too. Just remember that you are doing everything right, and you are a wonderful Mother doing a very difficult job. Hang in there! ((((Big Hugs))))

 

Dedee

[EAMom]

What do you do for your child while waiting for IVIg? My son is on abx, allergy meds, Metadate, and generic Celexa. Too much everything if you ask me.

 

He is just exhausted and depressed. Our families are no help (my parents are deceased, my mother in law is 86 and in frail health), my siblings that live close have all pretty much bailed on us. Depressing to be sure for me.

 

We have make it through to July 24 and I'm just not sure how that is going to happen. I know I wrote on here over a week ago about the same thing, but this is my only safe place to vent. I feel bad that he feels bad. He is so tired, fatigued and depressed. He has low IGg, no strep antibodies, and is just pooped from fighting strep and bartonella for so long......

 

It is just the bouts of tears every other day that are getting to me. No teenager should feel this bad.

 

Feeling pretty crappy myself right now. Blahhhhhhhh

 

Cobbie

 

can you do a steroid burst, or course of steroids to hold you over? We've done that before. WE've only done 5-6 day courses of steroids, and in our case it's taken about 2 weeks for the benefit to "kick in". I know other people have done longer courses, and it's kicked in sooner for some.

 

an alternative would be advil, to see if it gives you any relief. For us, the advil kicks in much more quickly (same day).

 

BTW, I don't know if steroids are bad if you have bartonella, I know they are bad with Lyme. So, maybe the advil would be a better choice?

[bigmighty]

Are you already doing advil? Check w/the doc, but advil 3x daily for six weeks might be an option.

[EmilyK]

What do you do for your child while waiting for IVIg? My son is on abx, allergy meds, Metadate, and generic Celexa. Too much everything if you ask me.

 

He is just exhausted and depressed. Our families are no help (my parents are deceased, my mother in law is 86 and in frail health), my siblings that live close have all pretty much bailed on us. Depressing to be sure for me.

 

We have make it through to July 24 and I'm just not sure how that is going to happen. I know I wrote on here over a week ago about the same thing, but this is my only safe place to vent. I feel bad that he feels bad. He is so tired, fatigued and depressed. He has low IGg, no strep antibodies, and is just pooped from fighting strep and bartonella for so long......

 

It is just the bouts of tears every other day that are getting to me. No teenager should feel this bad.

 

Feeling pretty crappy myself right now. Blahhhhhhhh

 

Cobbie

 

It's rotten to watch, isn't it? We sat and wrote a 5 point scale from one being excellent to 5 the meltdown, what it looks and feels like, and something to try when at that number to help feel better. It seems to help my ds just a little that he can label and reference ideas for what to do when there. Good luck

[Burnell]

celexa never helped our daughter. Lexipro is much better. Our daughte ris on that plus risperidol.

Generic drugs are not nearly as good at the brand name. I recently learned the FDA allows generic drugs to have the active drug dosed in a pill from 80% - 120% of the target dose. The non-active ingedients help with the time release.

Our daughter is having a flare up right now.

Do you see a pshchatrist? We saw one for a year (who prescribed the celexa) and never made much gain. After we swtiched psych docs, we tried several drugs and found a combo that really helped.

Even after IVIG your child's baseline may not be what it once was. HAving a good psych doc already will help manage that new baseline for your child.