10yr old dx with C3G and DDD

[MicheleMcgrade]

My son was just dx with C3G and Dense Deposit Disease- I’m looking for a support group / fellow parents who are also dealing with this.

[tofflenutmeg]

Hi Michele,

Our son was also diagnosed at aged ten two years ago with C3GN, the other C3G disease. It was a time a shock for us all - we found it helpful to bring our support networks in close, which for us was being with close friends - look after yourselves at this stage. It took about a year for it to become a new kind of normal in our heads.

For me it was helpful to try and understand the illness - you've probably seen this site for a clear outline: kidney.org/atoz/content/com...

We're in the UK and attending a conference here was helpful in understanding the illness and realising that there is progress in research in the area.

We are lucky that symptoms have been minimal so far. However, it really helped to bring school on board in understanding that he was sometimes tired and run down, and also worried - perhaps direct them to that site too.

Very best wishes to you all,

M

[MicheleMcgrade in reply to tofflenutmeg]

Hi thank you so much for your reply. I have so many questions if you don’t mind. May I ask what treatment your son is on also did you ever do genetic testing? Were you able to find out what caused it. And lastly, how limited is his diet, if at all? Thank you for your time answering questions- I’m sure you’re busy and I appreciate it-

Michele

New York

[tofflenutmeg in reply to MicheleMcgrade]

Hi Michele,

For our son Lisinopril (an ACE inhibitor) has so far kept the protein leakage down, so that's all he's on, with the dose gradually increasing, (perhaps just because he's growing). We did genetic test and it seemed not to be a factor in our case, so no, no clues as to what the cause was.

His diet is unrestricted at this stage, (just advised to keep within the normal levels for a child's salt intake). His activities are basically unrestricted. In the year before we started investigations, he went from being very sporty (though with gastro and respiratory problems) to running out of energy. Nowadays he is pretty active, but there are times when he feels exhausted, and over the winter he tends to pick up every virus going and takes a long time to shake them off.

It does seem that as his consultant explained to us, outcomes are very variable, so experiences seem to be very different - but it seems to be a good time in terms of the amount of research going on. Iowa has so far been too far for us to travel, but that sounds an amazing conference every October - I'm guessing you have their details?

Best wishes to you all,

M

[KatrineM Ambassador in reply to tofflenutmeg]

Hi and welcome Michelle!

My son in 13 and was diagnosed at 9.

He also ran out of energy when he got sick - so I am interested to hear he is not the only one, tofflenutmeg. He used to be very energetic. Also, he gets any virus going round.

His disease is aunder control - on ACE inhibitors, MMF and ciclosporin. Also almost weaned off pred. Kidney function normal.

I have found taalkning to other families to be a God send.

I am in the Facebook group "C3GN/DDD warriors", too.

[tofflenutmeg in reply to KatrineM]

Hi Katrine,

That's interesting to hear your son was hit by the lack of energy too. Again, that's something we've tried hard to help school understand - as an unknown disease it took a bit of explanation, and occasional re-explaining as he gets different teachers.

It's really helpful to hear about other people's experiences, thanks.

M

[KatrineM Ambassador in reply to tofflenutmeg]

Yes, we have had a problem with school. I pushed and pushed my son to go to school, but at the moment, he is not going. There has been very little understanding from the teachers.

I am working hard to find a solution. The doctors say it is not the kidney disease, they can't say whether it could be side effects to the medicine or not. He sleeps a lot for a 13 year old - 11 or 11 and a half hours a night. He is not depressed, just tired.

He has a teacher coming two hours a day ATM, am hoping he gets back to a normal school soon. Maybe a new school - there is very little cooperation from the current one.

[tofflenutmeg in reply to KatrineM]

Hi Katrine,

I'm sorry to hear how tough the school thing has been for you. We were able to arrange meetings with various staff members to convey the impact on our son, and with a new term about to start we will need to do so again. It's tricky with something invisible and un-measurable like energy levels. I guess the capacity to support and empathise will vary between schools. Our son has certainly missed a lot of school because of viruses.

Our consultant was not surprised by his reduced energy, and was kind enough to write a letter to school, part of which said "we quite often find that C3GN patients have reduced energy levels compared to their peers."

Hopefully as research progresses, potential side effects will be better understood.

Wishing you well with this schooling challenge,

M

[MicheleMcgrade in reply to tofflenutmeg]

Thank you so much for your input. It's very over whelming and we are not sure if he has DDD too or simply C3GN--We have sent his blood into Univ. of Cinncinati and Univ of Iowa over here in the States to help with research and hopefully get more answers.

Michele

[Vik95 in reply to MicheleMcgrade]

The only way we knew what type our daughter had was from a kidney biopsy.

[linfuller Ambassador in reply to MicheleMcgrade]

DDD and C3GN are subtypes of C3G. Usually patients have one or the other. This is determined from biopsy. The two subtypes are very similar, the main difference is the pattern of the deposits in the kidneys.

[DavidF_NKF Partner]

Hi Michele,

Welcome to the site. I hope we can offer you the support you're looking for.

Regarding fatigue, this is very common with C3G.

There are several things on the site that should be of help to you. If you click on the links under "Pinned Posts" (above), you will see:

- Webinar by 3 pharma companies on their new potential drugs & clinical trials

- EL-PFDD meeting on C3G: this will be very helpful to you for learning about the disease.

- There are also numerous pieces on kidney disease in general, which I hope you will look at.

Keep you questions coming- that's what we're here for.

[linfuller Ambassador]

Hi Michele! I'm glad you found this community - there are lots of experienced patients here to help you. Diagnosis can be so overwhelming, but you aren't alone and it will get less overwhelming as you learn the ins and outs. My son and I have C3GN, both of us starting to show kidney symptoms around the same age as your son. My son is 14 now, and stable with no current medications. I'm on eculizumab, and it is helping my kidney function a great deal.

We both deal with fatigue, and it is a common complaint. My immunologist believes it is because our immune system is always in a state of stimulation, working overtime, therefore the fatigue most people feel when they are sick is they way we feel all the time. We also have a tendency to pick up every illness that's going around, but I've found that sleep is essential - we are healthier when we stay well rested. Which is hard when you are dealing with chronic fatigue that can be severe and trying to live a normal life. But rest/sleep is a priority in our house, because we just must have it to stay as healthy as possible.

I'm not sure where you are located, but there is a fantastic family conference at University of Iowa in October. I strongly encourage you to attend if possible. It is so helpful to meet other families, you will learn a lot about the disease, and everyone involved is just wonderful. If you are interested, you can contact Jori at [e-mail].

We also have a FB group that you might find helpful: facebook.com/groups/1596621...

If you have questions, please ask away! That is what we are here for!

[MicheleMcgrade in reply to linfuller]

Linfuller - thank you so much for some insight into this disease- we are very knew to this whole thing and are waiting for a second pathologist to read my sons biopsy as it was unclear if he also has DDD and not just C3GN. We live in New York and definitely plan on attending conference in Iowa. My son’s kidneys are in good shape right now - he started the ace inhibitor and are about to start Cellcept. We are worried what kind of life he will be able to lead down the road. Will he be able to play sports, etc. How much fatigue will he feel- he also has ADD, wondering how this all will play out -So many unknowns right now, but I cannot tell you how thankful I am to you and all the parents responding on these sites. It is comforting to know we are not alone. I wish you and your son the best of health and am very glad to hear you are both stable.

Michele M

[AusTex77 in reply to MicheleMcgrade]

Michelle, do you see Dr. Andrew Bomback at Columbia. He is in New York. He and Dr. Carla Nester were the 2 specialists in the US that the Kidney Foundation recommended I reach out to when my husband was looking for someone that specialized in the disease.

[MicheleMcgrade in reply to AusTex77]

Thank you- no I initially saw

Dr Jain at Columbia who helped explain the diagnosis. Because of the frequent visits we decided to go to Cohens children hospital in New Hyde Park, it was easier to travel to. We are seeing Dr. Sethna there. My husband and I are considering returning to Columbia as we feel Dr. Sethna at Cohens is not as well versed in the treatment of this rare disease. My son was not responding to Cellcept as she had hoped and has put him on prednisone 20ml/2xday . We are hoping that we see some improvement with the steroid - We are concerned because he is experiencing aches and pains all throughout his body as well as chest pains and no doctor can tell us why. EKGs and xrays show nothing -so we are grateful for that . We Actually met Dr. Nester at the University of Iowa back in October when we went to the annual conference. I’m wondering if I should leave Cohens and go back to Columbia? Does Dr. Nester practice at Columbia or is she back in Iowa? Thank you for Your feedback - It is greatly appreciated

Michele

[AusTex77 in reply to MicheleMcgrade]

Dr. Nester is in Iowa. Dr. Bomback is at Columbia. They are both doctors listed on the expert explanations in this forum and Dr. Bomback is the one that is working with my husband’s nephrologist here in Austin. I had emailed him directly when my husband was first diagnosed, and he immediately emailed me back and was very responsive when I asked questions. I was so impressed and thankful.

[tineB63 in reply to AusTex77]

Dear Michele. Our daughter's results and biopsy were sent to Dr. Nester some time ago for their research. We are trying to get in to see Dr. Bomback. Would you happen to have an email address you can share? Very best of luck to your husband.

[AusTex77 in reply to tineB63]

Here is the link for Dr. Bomback and a phone number. columbiadoctors.org/andrew-...

[MicheleMcgrade in reply to AusTex77]

Wow thank you. Really appreciate it.

[bekind2u in reply to AusTex77]

My family is flying into Austin in 2 weeks. We are visiting family there.

[tofflenutmeg]

Hi Lin,

Thanks, that's a very helpful description of the fatigue. Have you found you've had to adapt your daily lives in any way may I ask, or ways which help?

I'm also wondering whether anyone else has found concentration impacted?

Best wishes,

tofflenutmeg

[bekind2u]

Just signed up for this site. I live in New York too. My son has the disease. We also met with Dr. Sethna. She was very nice but did not feel she was the right doctor. We are at Stony Brook University Hospital.

[MicheleMcgrade in reply to bekind2u]

Us too. She is very nice, but i don't feel she is right for us either. We are not sure what to do, was considering seeing Dr. Bomback at Columbia. Stonybrook is pretty far from us. We live in Queens. My son is on his third week with prednisone, so we hope next appt shows more promise. Praying for a miracle. How old is your son?