ER via ambulance # 3 since Saturday

[browneyesmom]

We are in ER for third time since Saturday - yes, ambulance again. They are transferring her to a neuro unit for a couple of days to observe & run tests. I'll be staying with her, no idea if there is wireless there or not. All labs here are WNL... strep titers will not be back for a few days. Is that typical?

 

My ex (her dad) and I have been back & forth on the phone most of the afternoon, trying to get docs connected, especially Dr. B. Last call he had to them, he told them it's the third time she's been transported via ambulance to the ER since Saturday. Response was that they see that all the time, that with PANDAS kids, it's fanatical. Ok, so that is somewhat reassuring... if one of her docs can only reach him for help!

[browneyesmom]

Sorry I'm not posting much on other threads today... things have been rough here last few days and we've been on the phone much of the time since we got to the ER today.

My ex (her dad) was able to reach Dr. B in CT. Said Dr. B was very reassuring, that we need to forget about SubQ Ig & go to IVIg instead, as well as increase her antibiotics. Dr. B said what he reported is not unusual with PANDAS and is 100% treatable with no lasting brain damage. That is when I lost it and the tears started.

Oh please... let him somehow connect with her docs here tonight!!

[Ozimum]

Hang in there! Cyber hugs coming your way.

Ozimum

[nevergiveup]

Sub Q is not for pandas, your in good hands with Dr B. I am sorry your family is going through this.

[nicklemama]

Hang in there. It must be very difficult. There were a few times I thought we might have to take our DS to the ER. Not a fun thing to have to do.

[norcalmom]

I'm so sorry you are going through this. Be strong. You are doing the right thing....high does IVIG has been great for our son, and I'm sure getting Dr B on your care team is going to make huge difference with your daughters care. Sending you good thoughts -

[Joan Pandas Mom]

Stay strong. We are all thinking of you. I know it is hard to do, but while you are in the hospital, you have some help, please try to take advantage of the help. It's so hard to do alone at home. Hang in there. Things will get better.

[marylandmom]

Thinking of you! This sounds so difficult but glad you all have started on the road with a PANDAS Dr. You are on the right path.

I agree with JoanPandasMom and try to use this hospital visit to get some help/rest if you can.

[Priscilla]

We are in ER for third time since Saturday - yes, ambulance again. They are transferring her to a neuro unit for a couple of days to observe & run tests. I'll be staying with her, no idea if there is wireless there or not. All labs here are WNL... strep titers will not be back for a few days. Is that typical?

 

My ex (her dad) and I have been back & forth on the phone most of the afternoon, trying to get docs connected, especially Dr. B. Last call he had to them, he told them it's the third time she's been transported via ambulance to the ER since Saturday. Response was that they see that all the time, that with PANDAS kids, it's fanatical. Ok, so that is somewhat reassuring... if one of her docs can only reach him for help!

 

 

we ended up in ER after 1st ivig. They wanted to admit her to PSYCH unit, but I said no, I thought it would make her worse. I have also had to tell many of my neighbors about the diagnosis, I live in a townhome, no getting around it. Fortunately I have lived there for 10 years and they know this is not typical, its new, so they have been pretty understanding. I know personally in the past we would get emotional, stressed out, or angry in reaction to the rages and this made them worse and last longer. Now I just kind of go numb, stay near, be totally quiet, and let get through it. Hard when she is trying to beat the ###### out of me, and sometimes I do have to grab her arms and remind her I am in control, but they definitely pass a little quicker that way. I pray for you, you must be in such desparation. I know the ER I went to was pretty shocked, wasn't sure if they believed me, but the nurse actually found discharge instructions in their computer system for PANDAS- she was pretty shocked when she found that. Maybe a higher dose ivig will help. IVIG 2gm/kg did help us, but a cold has now set us back. Hopefully you and your daughter will get relief soon. It is so easy to disconnect from them when they are like that, just remember she is sick- it really helped me to see my dd well for 2 mos, now I KNOW the BEAST is not really HER, but the ILLNESS.

[3boysmom]

Well, we also anxiously await a visit to Dr. B. He made me cry this week also! We were not his patients when I called hysterically to make an appointment after test results came in that seem to confirm that we don't only have one PANDAS son, but 3 PANDAS sons! He called me back and was so reassuring. We fly to CT at the end of January. Prayers to you and your family and prayers that both of our families can be helped by this caring doctor!

 

Linda

[Iowadawn]

browneyesmom-

 

Total empathy on the ambulance rides. One transport for ds11 was from school! Two from home with one event lighting up the neighborhood with colorful lights & sounds of all sorts. I feel your hurt.

 

The ASO strep titer is a fairly quick one within a couple days. The ADB is one that has always taken several days. It always seems like a month, but it is just a handful of days!! Yes, and we have tanked after IVIG's, also.

 

We have had good experiences in the child adol behavioral/psych unit. We have it in writing that he is welcome to utilize the unit in times of crisis or when he needs stabilized. His doc is the director. The environment is very structured, and predictable (especially since he's been there so often) that he is able to chill. We have been pleased with his tx.

 

Mainly, just want to say you are not alone!!

 

Dawn

[NancyD]

We have been through a similar experience. My heart goes out to you. You are in good hands with Dr. B!

 

It can be much easier and faster getting insurance approval for IVIg when the child is hospitalized so take advantage of that if you can. Also, be sure to take some breaks for yourself, find a quiet room to regroup, and cry if you need to. My thoughts are with you.

 

Nancy

[Stephanie2]

Wow, so sorry you are going through this. So glad that you are getting a good doc on board. Makes a world of difference.

[browneyesmom]

Thanks everyone... yesterday & today have been very rough... definitely not a rest time for me yet. She had an episode in our regular ER just before transporting her and another just before the spinal tap last night. Those certainly was easier to manage with all the help as it is usually only me and sometimes my husband also.

 

I got maybe 4 hours sleep last night. She had a LOT of pain today from the spinal tap... 3 times with pain at 10 on 1-10 scale and in tears, trying to cope.

 

I'll post a new thread as she is about to start IVIg in a few minutes...

[Fixit]

Thinking and praying for you and your family.