New here & in need of support.

[Hardymum98]

My DS (25months) has moderate Hypogammaglobulinemia. Hs been extreamly poorly since 8months old. We were diagnosed at 14months.
I want to know how you all cope????
So much more is expected of you as a mother... I never would of thought I would have the medical knolage I have now about the issues we face.
How do you know when to push for things with doctors & when to listen to there advice in the hope they are right & your wrong?
How do you face & deal with not having a normal motherhood?
The questions are endless & I feel so isolated.
Really hoping this board can offer support & advice.

I have a different experience to you in that my ds' issues are on the autistic spectrum and didn't become evident until he was older than your ds, so I can only imagine how hard it must be to come to terms with your child's difficulties at an early age.
Very much more is expected of you as a mother and you do have to get over a sort of grieving process for the child and mothering experience that you imagined. It takes some time to get used to that adjustment.
Are there any support groups you could access in your area as its good to find other people facing similar challenges to help you feel less isolated. Have the hospital given you any info on this sort of thing?

I was given the information for local SEN group with parents of children with all kinds of needs met up and swapped ideas and helped each other. This was a life-saver for me. Since then I have found other groups to join and finding parents of children with needs similar to my ds has made me feel less isolated. Some excellent people on here giving advice and support.

I've looked everywhere to be honest... His missing a part of his immunity (IGa) & is very low in another part of his immunity (IGg) unfortunately those two parts of his immunity ate the most important.
I asked the Paeds & they said I should ask my Heath visitor, my health visitor said she's never heard of the condition & know of no immune compromised children in the area.
I totally sick of being given the run around. I've had 0 support up till now where I attend a SN tots group but to look at my DS he looks heathy & normal (although he looks small & doesn't say anything only signs).
I've looked on google & only really old posts come up from adults.
Im on the verge of going on antidepressants because of finding it so hard. I've had to cut down my job to 2days a month because that's all his health allows.
I feel if he had a arm or leg missing things would be so much easier but his problem is hidden. I'm sick of hearing people say..."well he looks heathy" like I'm making it up.
I can't leave the house with out my pharmacy of different medications.
I can't leave him with people because they don't know his condition.
Day care & nursary are germ fields so they are out of the question.
I am greaving a normal motherhood, I'm also greaving my life. I feel so alone. I've tried everything to find a fellow mother but it's all been for nothing. The fustrating thing is I know there are other mums out there... 1 in 500,000 people have this condition.
I only recent found out I could of been claiming DLA...
It's so isolating. I'm like a medical professional when it comes to DS.
Sometimes I feel like if they stopped testing him altogether he would get better... (although in reality he would die). The more they treat him the more things come to light or side effects that need treating.
It's so blooming hard.

My dd has a condition which is genetic and it doesn't affect her immunity as such but means she can't deal with illness so she doesn't get ill more often but when she does its more serious/complicated if that makes sense. There is a brilliant support group for her condition which is a sub group of the charity CLIMB (children living with inherited and metabolic conditions) another good place for help and advice is the childhood growth foundation.

It is very stressful at times because as you say, you have to be the expert, GPs and even a and e doctors have often asked me what the usual plan is. It's important to have a protocol set up so for example my dd's consultant isn't there if we are in in the middle of the night but there is a letter I carry with me for paramedics and I would be able to show that to a and e staff if necessary. We have open access to a ward but it is often full. It makes me feel safer too as the letter is signed by the consultant so its not just me saying they have to do x y z to make sure she is ok, sometimes she looks really well and people often used to say but she looks fine! This happens less now that she is older but that is because she also has autism so the older she gets the more obvious her developmental needs are so its a separate issue to her condition.

I am not sure of the details of your sons condition but it may be worth getting in touch with contact a family, they have a database of conditions and can often match people up.

Meant to say, the early days after diagnosis are really tough to deal with so you are certainly not alone in finding it hard. I still have days where it hits me but the meds etc are part of our lives now so it is less overwhelming than it first was.

THANK YOU... I will google both those sites... You have no idea how helpful that is.
It's my dream to talk to a fellow mother with a child with the same condition.
I to have open acess to the local Children's ward & a letter from paeds. I carry round his file to all his medical things.
It's a real full time job looking after him.
Do you have a hobbie? If so do make time for your self or do you crack on with reality?
How do you cope watching your baby (no matter what age) suffer day after day? He's due his 3rd operation in 12months soon & I'm not sure I can watch him be put to sleep again... He screams & fights it... I just cuddle him till his body goes limp them walk away.
It haunts me for months. I really not sure I can cope but there is no option.

I totally get what you mean about being haunted by these things. The older my dd has got the less has needed doing as they can test her levels with finger pricks unless she is actually ill but we still have lots of procedures for various things it is horrible. Just working with play specialists for some treatment she is having and have asked her surgeon to delay a test which I felt was too much with the treatment too, its sort of easier now she's older, it certainly would be if she didn't have communication issues too but as a baby it was dreadful I really sympathise. All you can do is know that anything you have done/helped medical staff to get done has been out of love and because you had to for his well being.

I recently cried to dh as a doctor accused me of trying to "force" dd to have a scan she didn't want. The amount of times it's been the other way around and doctors have got me to hold her for stuff that is painful then all came back but dh said she wouldn't even be here if you hadn't done that which is so true.

I don't really have a hobby but the carers centre recently paid for me to do Pilates which has been great.

Contact a family is great, they have a helpline and can talk you through it all, I had a support worker from them to help me with my first DLA claim too x

I actually had a chat with some one today about the DLA form. It's hard because I've knowen no different... I've never sat down & concidered where we mite be had Joseph of not got his condition or what sort of mother I would be. I started off very laid back therefore requiring ALOT less of my time & I would still be able to work! it would be good if someone could sit down & go through the form with me.
I feel so fustrated inside so much of the time. How long did it take you to accecpt the fact that you would never have a normal motherhood?
The other day we had a day out as a family at the beach but we had to come home early because Joseph was so constipated... Of all things!! He was just in so much pain yet he pooped fine the day before!! If it's not his health spoiling or day out it's something else.
I've really thought about going on antidepressants but how I feel isn't a chemical inbalance in my brain it's my situation & I have no idea what will help me feel less emotional & stressed all the time.
I

Oh poor thing my dd suffers with that too its disruptive for everyone isn't it. I don't know if I've accepted it as such but I don't think about it as its normal now iyswim.

I had real trouble sleeping early on and went to the gp who was great and gave me beta blockers to help with anxiety, its worth going for a chat with them, I keep meaning to myself now. The gp and hv when dd was tiny agreed I was stressed but not irrationally as there was stuff to worry about and just said keep in touch. Even if you just talk to someone it may help. I found practising dd's injection with the hv calmed me down more than anything else as I felt I would be able to do it when needed.

Sorry don't think about it day to day that should have said! Or at least not all the time like I did to begin with, I really couldn't think of anything else and that has got better.

I emailed the charity today so HOPFULLY will hear back soon.
I am still Breast feeding 2-6 times a day depending in his health. He draws alot of comfort from it & I know it calms him so have dicided to give up when he choses to or when he stats school (if he ever does because of the virus & bacteria), so I'm not sure what I'm allowed to take regarding meds. I really worried about going to the doctors & them just offering me pills. But on the other hand what else can they do?
I am so emotional. Even going back through the DLA forms had me in tears because I'm not enjoying this like I drempted. We waited 5years to have children before I very nearly went insain then we tried for a year to get pregnant when I did I was on cloud 9 & was untill he was 10 months when I knew in my gut something wasn't right.
I am sick of worrying about every scrach, preempting every doctors move.
Don't get me wrong... I love my son, there could still be a umbilical cord between us were that close. He's my world but I'm struggling so much inside.