I’m angry

[AlwaysWorriedMom]

I’m feeling so angry and sick these days. My son is only 6.5 and we’ve been dealing with this for almost a year. I still can’t seem to accept that this is our life now. I’m angry that we have to go through this when we have done everything possible to ensure our kids were healthy and safe. I look at my friends’ kids and think “why us? Why are we being punished?”

My son had a relapse in the beginning of quarantine and after speaking with Dr  Schulman in May we started him on Clavulin (the Canadian version of augmentin) with a plan to taper the meds once he was doing well for several weeks in a row. He was doing SO WELL and we finally started to have some hope, and then a week ago today he started this new tic he’s never done before out of nowhere where he bends his arms and his wrists are limp (kind of like a t-Rex). He had a very loose tooth and I knew that could cause a flare, but the tooth fell out on Thursday and the hole seems to have closed up and the tic is actually worse than ever. Yesterday was my older son’s birthday and instead of enjoying it I spent the whole time watching my younger son’s constant tic and feeling sick about it. I was up all night with a stomachache from stress.

i can’t go on like this. I hate what my life has become and I’m crying all the time. I have no idea if this will ever go away, but even if it eventually does, we have a long road ahead of us and I don’t feel strong enough to get through it. My husband is angry with me for constantly feeling like this but I can’t help it. I don’t know what else to do.

 

 

[TeamTyrion]

I’m so sorry. I know exactly how you feel. Where are you in Canada? There are a couple of great FB groups with a lot of support and discussion. Pandas/Pans Ontario (Canada) Caregiver Support Group is excellent. It covers both tics and other symptoms such as Ocd and anxiety. It’s just a great group to relate to other parents in general. The daily support is necessary especially at the start. We’ve been on our journey for 7 years now and things have improved. I used to wonder how to get through the day too but not anymore. Hang in there. In so many cases things get better. Xx

[JessL]

Ugh. Big hugs. I'm so sorry, I really feel you.   I was where you are just last month, emailing and calling our doctor in tears asking if this is how our lives will be forever now. I still wake at all hours of the night with a hundred questions and thoughts etc, waiting for the night time wake ups of screaming etc.  It feels neverending. PTSD for parents with PANS/PANDAS is SO real.  The caregivers need help too.  This is a lonely wild ride.  If you're able to find a support group I know a lot of parents find just venting to people who understand therapeutic. Xxo

[AlwaysWorriedMom]

I’m in Quebec and I’m not on Facebook (wondering if it’s worth opening an account just to join that group). 

it’s such a rollercoaster and each time he gets worse again it’s as if I never learn because it hits me hard. The last few days were good. Today was bad. He has a tooth pushing through but I don’t know how much I can blame that. I guess we’ll see within a few days, but then there’s always something else causing a flare - illness, teeth, etc. I am just so damn miserable all the time, and I don’t know how to train myself to accept that this is life for the next god knows how long. 

Dr Schulman said most kids outgrow it around puberty but I’ve heard mixed feedback about that. 

[Cmac]

I’m so sorry. I know exactly how you feel. My guess is that you’re the primary caregiver so you’re seeing it/dealing with it more than your husband. Try to get a break for yourself every now and then (I know it’s extra hard with quarantine issues, etc) but if you can even go for a walk by yourself it can help.

It’s all just so hard. Every bit of it. It’s a constant game of whack a mole as you try to figure out exactly what is causing the flare.

It won’t always be this bad. Things will improve. And you will find the strength to deal with future bumps in the road.

Take heart—we’re right there with you in the trenches!

[AlwaysWorriedMom]

Thank you Cmac. Yes, I’m the one home with both my kids as I haven’t been working during Covid, but my husband is extremely hands on when he’s home. It’s just that he’s not home much during the week and I feel really burnt out. 

It truly sucks to always be watching my son for tics instead of enjoying him. I’m so nostalgic for the days before PANDAS too over my life. 😢

[TeamTyrion]

Support is crucial I believe. For years I only went on FB for the Pandas support group. And you can even use an alias or just part of your name if you prefer to be anonymous. That way you can get the support you need without the hassle of being “found” by old friends etc.